Real-world epidemiology and renal outcomes of ADPKD in Türkiye: the PKD-TURK cohort

Abstract Introduction Real-world epidemiological and longitudinal outcome data on autosomal dominant polycystic kidney disease (ADPKD) remain limited in underrepresented populations, including Türkiye. We aimed to characterize the epidemiology, regional distribution, and renal outcomes of ADPKD in a large multicenter national cohort. Methods In this retrospective multicenter study, adult patients with ADPKD were identified across tertiary nephrology centers in six regions of Türkiye (2010–2025). Study-based prevalence was calculated using Turkish Statistical Institute population data. Longitudinal renal outcomes were evaluated using serial eGFR measurements and Cox regression models identified predictors of ≥ 40% eGFR decline. Results A total of 2361 patients were included (mean age 38.6 ± 14 years; 51.8% female). Median province-level study-based prevalence was 3.86 per 100,000 population (IQR 2.92–5.49), with substantial regional variation, highest in the Black Sea region (13.46 per 100,000). Study-based prevalence increased significantly over time (annual percent change 14.4%; 95% CI 13.1–15.6; p < 0.001). During a median follow-up of 6 years, 23.9% experienced a ≥ 40% eGFR decline and 10.5% progressed to kidney failure (eGFR < 15 ml/min/1.73m2). Median annual eGFR decline was − 3.33 mL/min/1.73 m²/year. In multivariable analysis, age (adjusted HR 1.02; 95% CI 1.00–1.03; p = 0.010) and hypertension (adjusted HR 2.33; 95% CI 1.25–4.32; p = 0.007) were independently associated with renal progression, whereas tolvaptan use was associated with a lower risk of progression (adjusted HR 0.56; 95% CI 0.37–0.85; p = 0.004). The Mayo Imaging Classification remained independently predictive of renal outcomes (p = 0.027). Conclusions This large real-world multicenter cohort highlights the geographically heterogeneous study-based burden of ADPKD across participating regions of Türkiye. Increasing prevalence over time likely reflects improved disease recognition, whereas the relatively low study-based prevalence suggests persistent under-recognition of ADPKD. These findings provide important longitudinal outcome data from an underrepresented population and support the need for earlier detection and improved risk stratification in ADPKD.

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Journal
BMC Nephrology
Published
2026-07-24
DOI
https://doi.org/10.1186/s12882-026-05217-0
Primary Topic
Genetic and Kidney Cyst Diseases
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article
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article

Real-world epidemiology and renal outcomes of ADPKD in Türkiye: the PKD-TURK cohort

Necmi Eren, Saliha Yıldırım, Özgür Can, Bülent Huddam et al.
BMC Nephrology
Genetic and Kidney Cyst Diseases
article

Real-world epidemiology and renal outcomes of ADPKD in Türkiye: the PKD-TURK cohort

Necmi Eren, Saliha Yıldırım, Özgür Can, Bülent Huddam, Mehmet Ası Oktan, Abdülmecit Yıldız, Emre Yaşar, Melike Betül Öğütmen, Alper Azak, Tülin Akagün, Ayça İnci, Sinan Kazan, Aysun Toraman, Serpil Müge Değer, Funda Sarı, Hülya Çolak, Hayri Üstün Arda, Beyhan Güvercin, Sibel Gökçay Bek, Sabahat Alışır Ecder, Kenan Turgutalp, Mine Şebnem Karakan, Tevfik Ecder, Tahsin Karaaslan, Hacı Hasan Yeter, Onur Tunca, Ülver Derici, Musa Pınar, İlhan Kurultak, Serkan Bakırdöğen, Halime SOYAK, Sibel Yücel Koçak, Özlem Tiryaki, Belda Dursun, Selma Alagöz, Bülent Kaya, Eren Eynel, Kürşad Öneç, Asil Demirezen, Hamad Dheir, Metin Ergül, Gülay Ulusal Okyay, Gürsel Yıldız, İlker Atay, Ramazan Daniş, Bartu Ediz, Berna Yelken
article en

Abstract

Abstract Introduction Real-world epidemiological and longitudinal outcome data on autosomal dominant polycystic kidney disease (ADPKD) remain limited in underrepresented populations, including Türkiye. We aimed to characterize the epidemiology, regional distribution, and renal outcomes of ADPKD in a large multicenter national cohort. Methods In this retrospective multicenter study, adult patients with ADPKD were identified across tertiary nephrology centers in six regions of Türkiye (2010–2025). Study-based prevalence was calculated using Turkish Statistical Institute population data. Longitudinal renal outcomes were evaluated using serial eGFR measurements and Cox regression models identified predictors of ≥ 40% eGFR decline. Results A total of 2361 patients were included (mean age 38.6 ± 14 years; 51.8% female). Median province-level study-based prevalence was 3.86 per 100,000 population (IQR 2.92–5.49), with substantial regional variation, highest in the Black Sea region (13.46 per 100,000). Study-based prevalence increased significantly over time (annual percent change 14.4%; 95% CI 13.1–15.6; p < 0.001). During a median follow-up of 6 years, 23.9% experienced a ≥ 40% eGFR decline and 10.5% progressed to kidney failure (eGFR < 15 ml/min/1.73m2). Median annual eGFR decline was − 3.33 mL/min/1.73 m²/year. In multivariable analysis, age (adjusted HR 1.02; 95% CI 1.00–1.03; p = 0.010) and hypertension (adjusted HR 2.33; 95% CI 1.25–4.32; p = 0.007) were independently associated with renal progression, whereas tolvaptan use was associated with a lower risk of progression (adjusted HR 0.56; 95% CI 0.37–0.85; p = 0.004). The Mayo Imaging Classification remained independently predictive of renal outcomes (p = 0.027). Conclusions This large real-world multicenter cohort highlights the geographically heterogeneous study-based burden of ADPKD across participating regions of Türkiye. Increasing prevalence over time likely reflects improved disease recognition, whereas the relatively low study-based prevalence suggests persistent under-recognition of ADPKD. These findings provide important longitudinal outcome data from an underrepresented population and support the need for earlier detection and improved risk stratification in ADPKD.

BMC Nephrology
Sakarya University (TR), Balıkesir University (TR), Çanakkale Onsekiz Mart Üniversitesi (TR), Trakya University (TR), Bursa Uludağ Üni̇versi̇tesi̇ (TR), Izmir University (TR), Giresun University (TR), Ankara University (TR), Karadeniz Technical University (TR), Manisa Celal Bayar University (TR), University of Health Science (KH), Dokuz Eylül University (TR), Akdeniz University (TR), Bağcılar Eğitim ve Araştırma Hastanesi (TR), Bakırköy Dr.Sadi Konuk Eğitim ve Araştırma Hastanesi (TR), Haydarpaşa Numune Eğitim ve Araştırma Hastanesi (TR), Sağlık Bilimleri Üniversitesi (TR), Diyarbakır Gazi Yaşargil Eğitim ve Araştırma Hastanesi (TR), Liv Hospital (TR), Şişli Etfal Eğitim ve Araştırma Hastanesi (TR), İstanbul Kanuni Sultan Süleyman Eğitim ve Araştırma Hastanesi (TR), Pamukkale University (TR), Mersin Üniversitesi (TR), Kocaeli Üniversitesi (TR), Afyon Kocatepe University (TR), Düzce Üniversitesi (TR), Cukurova University (TR), Istanbul Medeniyet University (TR), Gaziantep University (TR), Hacettepe University (TR), Muğla University (TR), University of Health Sciences Antigua (AG), Gazi University (TR)
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